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AARP Expert

Any LGBT caregivers out there? Or caregivers to LGBT folks?

Hey there, caregivers.

 

Are any of you LGBT? Or do you care for a person who is L, G, B or T? 

 

http://www.aarp.org/relationships/caregiving-resource-center/info-11-2010/cultural-competence-and-se...

 

That article here on aarp is a pretty good overview of the issues. How to provide care when either you yourself are gay (or lesbian or bisexual or trans) or, how to provide care to someone you love who is LGBT.  There is a legitimate concern of aging gay folks, that they will be rejected for their sexuality, which is only one part of who they are, but an important part. Perhaps a gay uncle didn't come out of the closet to his family until his 60s, and now's he 87 and needs help, but is afraid to have a home health aide start praying over him once they discover he's gay. And he really doesn't want to have to go back in the closet if he needs the supervision and support of an assisted livng facility or a nursing home.

 

I am a lesbian, and a medical geriatric social worker. I've taken care of both my parents, now deceased, and i have a partner who has multiple sclerosis. I wonder if there are folks reading these messages in the caregiving community who'd like to talk about this. Tips, stories, adventures, revelations.

 

Anybody out there???  "Out" and about???

 

🙂

 

Jane

Community Concierge

Here's a new article released this month on caregiving in the LGBT community. 

Can you relate to Cindy and Helen's story? 

 

AARPJen
Caregiving Concierge
AARP Expert


@Jen wrote:

Here's a new article released this month on caregiving in the LGBT community. 

Can you relate to Cindy and Helen's story? 

 


I sure can! Although I'm of a slightly younger generation (I'm 58), my partner is 70 and has MS. We cannot marry because she would lose income from a former spouse's pension (a situation straight people face as well), and so we'll need to use the Preparing to Care guide to protect her dignity, choice, legal rights, and care preferences, as well as mine!

 

Well done, AARP!

Newbie

Hi! My name is Andy and I am 52 and gay and caring for my partner who is 50 years old. We have been together for 23 years (today) and I can tell you we have we seen some good times, and recently some pretty bad ones. About 10 or so years ago my partner became disabled with a rare neuroligical disease and things seem to just have become worse and piled-up sinc. He was able to recover from the disease but soon began to have additional problems, one after the other. He hadn't been working for some years before it all started and has not worked since. I have been our sole financial provider for over 15 years and have been sole caregiver since 2006.

 

We both drank heavily most of our lives and decided to get sober about 6 months apart, roughly 7 years ago. I stayed sober and he relapsed after about 5 years, about 2 years ago. His drinking finally caught up with his liver and it failed at the beginning of this year.

 

The liver failure caused a "leaky" right heart valve which caused high blood pressure in the lungs, stalling the liver transplant evaluation that was already underway. The liver doctors will not evaluate for transplant unless they know he will be "operable", and he will not be operable until the lung and heart situation are stabalized.

 

That was six months ago and my partner has been home for the last 4 months and is on several medications to keep his liver functioning and his system compensating, while the doctors try to bring down the pressure in the lungs. We entered my partner into a medical trial for additional medicine for the lung problem in hopes of getting better care and that it may heal the problem quicker.

 

It has been a rough time caring for and watching someone who is gradually becoming less able to care for themselves despite all my best efforts. It is exhausting and frustrating and sometimes downright depressing.

 

I have a full-time job as a technical professional and I also spend a good portion of my free time giving back to the communiity that has freely given me my sobriety. I am thankful that the powers that be decided it was just the right time for me to be a sober friend to my partner. I am grateful for the higher-power that I found on my journey and for the fellowship and support that comes along with it.

 

Nevertheless, the feelings of inadequacy, guilt, anger, fear and uncertainty remain! I am putting all my efforts into caring for my partner and none into caring for my physical and mental health. I put the rest of my efforts into my job and volunteer work, which leaves little time for myself. I could cut back on the volunteer time but that is often the only bright part of my day. I am saying all this not to garner sympathy but just as a way to introduce myself and my situation, and state of mind. I am willing to take all advice and also willing to share my experience, strength and hope with whomever will listen.

 

Thanks for listening and I look forward to talking to you all!

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AARP Expert

Hi Andy!  So glad you wrote and introduced yourself!

It's almost 7 in the morning here in Eastern Oregon, 59 degrees and dry, as i live in the Oregon Outback as it is called, also known as high desert. It will be in the upper 80s but always cooler in the shade. I live with my 70 year old partner out here, and she has MS, although she is very healthy, and a part time ranch hand. If you ever have an organic, grass fed free range hamburger in Portland....  I'm 58 and  have my own health problems mostly related to my diabetes. So we'll see who lives longest.

             Has your partner applied for social security disability? He is certainly eligible. His income would not be the same as yours, but it WOULD be income. 

             I am so glad you have found sobriety. Praise be to the higher power. My partner is a black belt member of alanon, having had 3 alcoholic husbands before she figured out she is gay (late bloomer!). We've been together 7 years. BTW, happy anniversary! 23 years is impressive!!

             I'm glad you keep going to your group/volunteer place which makes you happy and pays it all forward. You need that for sure.

             Have you tried enlarging your caregiving circle?  To other friends, family, members of a faith community, friends of his of long standing? Getting some sort of schedule where, say, "Ed" shows up once a month to watch old movies together so you can get 3 hours off.... I recently bought on DVD a double feature of Le Cage Aux Folles, and the remake with Robin Williams. What a hoot. I laughed again so hard i felt like i'd done sit ups. Which i need to do!

           Very glad you're here. Write more!  We who are queer caregivers salute you!

           Jane

           who isn't in the middle of nowhere but can see it from here....

Community Concierge

Hi everyone!

I wanted to let you know that we have updated our LBGT article for caregivers. You can see that HERE

AARPJen
Caregiving Concierge
Contributor

Hi there!  I have worked with some in the LGBT community.  It doesn't matter to me what you are!  Regardless of it your L,G,B,T or S (traight), we are all human and need care, love and assistance during our lives.  I honestly don't see how someone can call themselves a care giver and not be willing to help certain people.   Everyone deserves respect and proper care.  It really irks me when someone can't find a caregiver because of who they are.  Sorry if that became a rant!

Contributor

LOCATION PENSACOLA FL: my name is Ross: I am seeking full or part time employment as a home health care and service provider for a couple or an indivdual male,I have 10 years experience and excellent reference. service provided: house keepingn,laundry,meal prearation, shopping,doctor appointments,and all errands,for more information please call 850 607 7376     

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Hi my nane is Ross: I am independent home health care and service provider I am looking for part or full time employment for a couple or an individual male.I have 10 years experience and excellent reference.Service provided: house keeping, laundry, meal-preparation, shopping, doctor appointments,and all errands,for more informatio please call 850 607 7376          location Pensacola fl     

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Hey Ross! Sounds like the people of Pensacola FL are lucky to have you available! Best of luck!

Jane
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While I do believe you are very well intended but you should care if they are older LGBT adults. In the many trainings that we do here, your statement is very common. But I can tell you do care for everyone...and that is a great quality.

 

Many older LGBT adults have faced a lifetime of government sanctioned discrimination, they have faced loss of employment, loss of family and so many more things that their straight counterparts have never ever thought of or privileges that they take for granted that their LGBT counterparts have  fought long and hard to attain.

 

I hope that through understanding the history and culture that hopefully you see why it's important to see that you may have to treat them differently, understanding why trust might of service workers might take longer, why they might not share who are the most important people in their lives.   Understanding that their families may be different from the traditional families, understand how by treating the same there can be an unintentional discrimination. I can't tell you how many individuals have gone back in the closet because as they become more vulnerable they are frightened if someone will find out.  On the other hand many have never come out.

 

Like I said, I believe your intentions are very well intended, but if you are not LGBT, it's difficult to understand what many of have experienced over a lifetime. Many cities are developing older LGBT training and depending upon where you live, I would suggest you see about training for you and your colleagues.  Trust me it's well worth the time. Good luck and seriously thanks for caring!

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AARP Expert

Hi PatriciaM!

You sound like family. 

I think that AARP has done a pretty thorough job of including LGBT folks in their resources offered for caregivers, and through the Pride page on the web site. But as you well know, we who are Rainbow are the best sources of perspective on the issue. I used to work for AARP, and wrote some of the original articles on caregiving for queer people. Since then there is much more. So that's very cool. Encouraging, i think, in this current situation where our president is throwing us under the bus.

 

Are you a caregiver?  Like so many of us, i have been a caregiver, and will be again. My partner has MS. She is extraordinarily healthy despite that; she works as a ranch hand, walking miles of fence to keep the 'grass fed, free range, antibiotic free' cows off the road. She hurls hay into the feed lot. She used a wood splitter and cut and stacked all of next winter's wood. Still, she's about to turn 70, and she has more and more difficulty walking. She'll be using a cane soon. And when other things become harder for her, i will take up the slack. We hope for a bright future; we've been together 6 years. I am very willing to do what needs to be done.

 

Thank you for writing. We, the gender outlaws, have so much to offer each other, and much to straight folks' surprise, to straight people as well. Meanwhile, we get up every morning and do what needs to be done, just like everyone else.

 

Do write more? Thank you for writing what you have. and Good morning!

Jane

(Lavender Jane loves women!)

Periodic Contributor

Hi Jane,

 

Thank you for the warm welcome.  Yes, of course I am "family."  Card carring lesbian.  LOL

 

A bit about me...yes, I have shared caregiving for my mother, dad and aunt all who have been gone now for many years now.  Besides learning a lot from being the part-time caregiver, full time employed it was the impetus to return to school and get my masters in human services - gerontology. Of course the area that I concentrated on was LGBT aging.   One of the questions I had to ask myself at the time was “ my Dad, brother and I take care of mother, but who will take care of those in our own LGBT community who don’t always have those resources as we age?”   I didn’t have a good answer.  At the time of my studies, there was little research done on aging LGBT, but you are absolutely correct, there has been more work toward understanding caregivers and LGBT older adults. 

 

A University of Washington professor is known both nationally and internationally for her research and studies of aging LGBT adults and has done a lot for changes in the field.   I consider myself fortunate to be able to call her both a friend and sit on the board of directors with her on a non-profit. . I also founded a  small non-profit 30 miles south of Seattle where we provide cultural competency trainings to professionals who serve the aging population as well as throw events for LGBT older adults in an effort to fight isolation. I also sit on our state council on aging and triple A.   LOL this is what retirement looks like. 

 

Pat

AARP Expert


@PatriciaM2 wrote:

Hi Jane,

 

Thank you for the warm welcome.  Yes, of course I am "family."  Card carring lesbian.  LOL

 

A bit about me...yes, I have shared caregiving for my mother, dad and aunt all who have been gone now for many years now.  Besides learning a lot from being the part-time caregiver, full time employed it was the impetus to return to school and get my masters in human services - gerontology. Of course the area that I concentrated on was LGBT aging.   One of the questions I had to ask myself at the time was “ my Dad, brother and I take care of mother, but who will take care of those in our own LGBT community who don’t always have those resources as we age?”   I didn’t have a good answer.  At the time of my studies, there was little research done on aging LGBT, but you are absolutely correct, there has been more work toward understanding caregivers and LGBT older adults. 

 

A University of Washington professor is known both nationally and internationally for her research and studies of aging LGBT adults and has done a lot for changes in the field.   I consider myself fortunate to be able to call her both a friend and sit on the board of directors with her on a non-profit. . I also founded a  small non-profit 30 miles south of Seattle where we provide cultural competency trainings to professionals who serve the aging population as well as throw events for LGBT older adults in an effort to fight isolation. I also sit on our state council on aging and triple A.   LOL this is what retirement looks like. 

 

Pat


I think I've met that UW professor. She is an inspiration, and she's an ally. Thank god/ess for academicians like her.

Sounds like your retirement is very full!

You're aware of this then: http://www.lgbtagingcenter.org/resources/resource.cfm?r=865

 

I moved to a county with 7500 souls in it (the size of Connecticut), and although it is in Oregon, its politics is more like Idaho or Wyoming. As far as i can count, there are 10 out people here. And in my 8 months as a practicing therapist, i've met and worked with 2 transmen, one intersex client, and a lesbian teenager. Amazing. My partner and i live in a very small town, "250 people when they're all home" as she puts it. Although all 3 churches in town are very conservative, and many of its people are, too, i've ingratiated myself in several ways, like joining the volunteer group, and mentioning on facebook when i'm heading to town to see if anyone needs a rotisserie chicken or a prescription at the one pharmacy in the entire county. I may be a lesbian, but i'm a thoughtful lesbian.

 

Glad to meet you!

Jane (on facebook as Jane Lincoln)

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Jane,

 

Are you in Eastern Oregon?   Most of the towns in Eastern WA are exactly how you described your town. I don’t know that I could live in rural areas anymore despite growing up that way.  Small town in western WA and my father was a logger.  Mixed political family, mother was a liberal, my dad and brother red-neck conservatives.  My dad and brother just learned not to say much because my mother and I were much more vocal.

 

Yes,  the UW profession is very inspirational; she’s a great speaker and has done some amazing work. .

 

Pat (aka Patricia McIntyre)

I’ll send you a friend request on FB, I will be the person with a picture of a calico cat.  I would certainly like to keep up some of our conversations.

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@a721887b wrote:

Hi there!  I have worked with some in the LGBT community.  It doesn't matter to me what you are!  Regardless of it your L,G,B,T or S (traight), we are all human and need care, love and assistance during our lives.  I honestly don't see how someone can call themselves a care giver and not be willing to help certain people.   Everyone deserves respect and proper care.  It really irks me when someone can't find a caregiver because of who they are.  Sorry if that became a rant!


Thank you so much for your rant! And for your service to humankind, and your openness and affirmation of the sexual minorities known as LGBT et al. You are a gift, and i wish there were more like you. I think that as time passes, and the 'silver tsunami' hits in force, there will be more generous and skilled people like yourself. The silver tsunami refers to the baby boomers hitting retirement age and then in 20 years, bulging the population of people with disabilities, including dementia. And many if not most will need paid caregivers like yourself. 

 

We are here, we are queer, and we need our diapers changed!  Gently, and please put on lotion after!

 

Or something!

 

Jane,

a lesbian gal in rural oregon...

Contributor

Does it count if I'm not even sure about that any more? 

 

I mean I used to be a lot of things, a single gay man was one of them, but at this point I hardly feel like I exist any more. I knew returning to small town WV was going to require a bit of a step back into the closet, but it's gone so much further than that. This is practically Narnia, and I might as well be the lamp post. 

 

My caregiver experience has been that you have to completely give up everything to take care of someone. I thought I knew what I was getting into, I went through at lot of this as a teenager taking care of my mother with early onset Alzheimer's and my dad with diabetes and chirossis. What I didn't realize that in the interim I was temporarily allowed to be a person instead of an appliance, and how difficult it would be to give that up. I can certainly sympathize with care recipients who find themselves needing care and wishing to retain their identity. It's hard enough giving up everything about yourself as a carer, I can't imagine trying to do that on top of everything else as a care recipient. 

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@ja8525501 wrote:

Does it count if I'm not even sure about that any more? 

 

I mean I used to be a lot of things, a single gay man was one of them, but at this point I hardly feel like I exist any more. I knew returning to small town WV was going to require a bit of a step back into the closet, but it's gone so much further than that. This is practically Narnia, and I might as well be the lamp post. 

 

My caregiver experience has been that you have to completely give up everything to take care of someone. I thought I knew what I was getting into, I went through at lot of this as a teenager taking care of my mother with early onset Alzheimer's and my dad with diabetes and chirossis. What I didn't realize that in the interim I was temporarily allowed to be a person instead of an appliance, and how difficult it would be to give that up. I can certainly sympathize with care recipients who find themselves needing care and wishing to retain their identity. It's hard enough giving up everything about yourself as a carer, I can't imagine trying to do that on top of everything else as a care recipient. 


Hi there, JA from west virginia,

 

or rather IN west virginia. since you mentioned you're returning, perhaps you are from there, or lived there at one point. It does sound as if the caregiving experience is pretty near to sucking the life out of you. Or at least your sense of self which is shrinking to only that: caregiving. This is so common. 

 

I hear you about whether you even know if you're a gay single man or not, anymore. I have a dear friend in her late 60s and she's been single so long she kinda forgets she is a lesbian. Seems irrelevant. Other parts of her identity come to the fore front. Happens particularly when you're single. 

 

Are you caring for a family member? an old friend? is there anyone else who helps, gives you a break, pitches in?  are there any caregiving support groups where you are? sometimes local hospitals have a group. 

 

I live with my partner, and just moved to a county in southern oregon that is cowboy/redneck rural to the max. There is no traffic light IN THE ENTIRE COUNTY. we found out about an LGBT potluck in the next county over and in one day met 4 other lesbians. It was such a treat. I know there are gay people in West Virginia. Sounds like you lack the energy to look for them. But i think it might be worth trying.

 

Fellow queer in the country: i salute you.

 

Now, what are we going to do about your burden, here? Hm?  You are not dead yet. So how can we bring life to your situation? Some relief? Talk to me.

 

your fellow gay-blossom-in-the-desert,

 

Jane

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Contributor

Hi Jane!
I have been a caregiver of sorts my entire life in some form or fashion, and I am openly gay. I have worked hospice, been a medic, and am currently pursing further nursing credentials.
My wife and I have been together 9 years and married for about 18 months. I look forward to making new friends on here. Are there any gblt-specific groups on here? If not, perhaps we should start one!
Take care,
~Tracey~
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Hey Tracey!  Nice to 'meet' you!  Yeah, me too. I've been a medical social worker for 30 years, and helped to care for my grandmother, my mother, then my father. My partner has MS, although she doesn't need caring for at this time, thank the god/ess. I remind her to take her baclofen, mostly.  😉

 

I did hospice social worker for 18 months. The nurses really run the show! Awesome women (no menfolk at our hospice, except for PTs).

 

There is the page on finding gay friendly care, which i wrote way back when i worked for aarp almost 10 years ago: http://www.aarp.org/relationships/caregiving-resource-center/info-11-2010/cultural-competence-and-se...

 

and there's the page for us gay folks in general, at http://www.aarp.org/home-family/voices/lgbt-pride/. But there isn't a discussion community for us that i can find. A great idea!  

 

I'm glad you're out and proud, and especially to reply to you on National Coming Out Day!  I've moved from a very gay friendly place (Washington DC) to a very conservative sparsely populated area (Lake County, Oregon) and there's definitely hostility here. Apparently everyone in the small town i live in with my partner already knows who (and what) i am, so i don't have to come out, exactly. But i'm looking forward to winning people over with my sense of humor. We'll see how that goes.  Funny/odd that the homophobes, to a person, simply refuse to look me in the eye. When i confirm who they are, my partner says, oh yeah, total fundamentalist. Weird.

 

Congratulations on your marriage! For financial reasons which effect str8t people, too, we won't marry legally, although i'd love a church blessing at some point. (I'm an episcopalian and most of the priests i've known and loved are gay!)  All in good time.

 

So glad you wrote. You've reminded me to hang out on the lgbt page here on aarp.org and comment, to give the pages there 'eyeballs.'  🙂

 

Hope you've enjoyed your day!

 

Jane

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Well heck, at the risk of having an echo chamber in here (thank goodness Dr Imani chimed in as well!!!) I will write another post...

 

So, I've moved to a rural area in southern Oregon that is not known for being progressive or gay friendly at ALL. And I'll be shopping for a health care provider. And in googling my little LGBT heart out, I found 2 articles in the local rag, the Klamath Herald and News, on getting health care as a gay person. Both articles are mostly about transgender health care, which is the hardest kind to find anywhere, in the LGBT realm. The very hardest.

 

Here's the second article of the 2 part series: http://www.heraldandnews.com/news/local_news/community/lgbt-in-klamath-health-care/article_92603849-...

 

And what i notice is that some brave soul named Sam did manage to find health providers who were willing to care for a transgender person, including managing hormones, etc. Primary care for trans people. Excellent. But when Sam went back to ask if any of them would be willing to be included in a DIRECTORY of LGBT-friendly providers, ALL OF THEM turned Sam down. 

 

So, to be seen in a directory of providers as an LGBT provider is too scary, too stigmatizing, to risk in Klamath County Oregon. Which is by the way the poorest county in the state. 

 

This gave me pause. 

 

My partner is independent despite a progressive neurological disease, and I have my own bag of ailments. I want us both to remain as healthy as possible as I approach 60 and she approaches 70. And i do NOT want to have any medical provider disapprove of my life or my love as a lesbian. Thank you very much.

 

I have been madly googling since i moved here. I found this: http://www.friendlyhouseinc.org/wp-content/uploads/2009/05/2015-Housing-Brochure-online-version-1.pd...  Which lists gay friendly places for seniors to retire or to receive gay friendly assisted living. They are all around or in Portland which is the most heavily populated area of Oregon. Doesn't help me. I don't need that kind of care yet, but if there isn't anything south of Portland, my work is cut out for me.

 

Any other LGBT folks in rural areas?  How did you find care? I'm looking up all the Pride organizations, i looked up SAGEUSA web site. I'm still looking...

 

Jane

in Klamath and Lake Counties, Oregon

Newbie

Hello Jane,

I am a lesbian caregiver of my 83 year old stepmother who is in good physical health with a little memory loss. She is truly a stereotypical woman of her generation, never working outside of the home after marriage, and her husband, my dad, and managing everything. And in old age she is pretty much the same. She attends day care 4 days a week (God Bless the Downtown Clusters in Washington, DC!) and lives with my wife and I. I am her primary caregiver. 

A challenge that has consumed us from time to time and that has raised its ugly head again is: how can we slip away when we want to escape for a weekend or a week? How do we hire a "grand-ma sitter?"  Is there any such person, place or thing?!

We're going on vacation for a week  There is no on in her family she can stay with or wants to stay with LOL! We've thought about hiring an LPN or an aide, but they are ghastly expensive and bring a skillset that we don't necessarily need. Our solution to our vacation challenge is that she'll stay with my son and his family, event though they both work and have a little one, and he's watched at home. But what we really want is some sort of adult overnight camp like the day care center where she can spend the week  - a vacation of sorts for her; while we are out.  

 

Dr. Imani
Contributor

Hello dw9911,

I am brand new here, but maybe I have suggestions to help. Can you check into a local United Way or Alzheimer's Association? The former is a good social service resource and the latter truly helped me alot when my grandmother needed care. If you have an established lgbt community where you live, perhaps ask around or post an ad in a gay newspaper. Don't forget other resources like churches, synagogues, etc.
Just remember, you must take time to care for YOU first.
Hope this helps! 🙂
~Tracey~
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@dw9911 wrote:

Hello Jane,

I am a lesbian caregiver of my 83 year old stepmother who is in good physical health with a little memory loss. She is truly a stereotypical woman of her generation, never working outside of the home after marriage, and her husband, my dad, and managing everything. And in old age she is pretty much the same. She attends day care 4 days a week (God Bless the Downtown Clusters in Washington, DC!) and lives with my wife and I. I am her primary caregiver. 

A challenge that has consumed us from time to time and that has raised its ugly head again is: how can we slip away when we want to escape for a weekend or a week? How do we hire a "grand-ma sitter?"  Is there any such person, place or thing?!

We're going on vacation for a week  There is no on in her family she can stay with or wants to stay with LOL! We've thought about hiring an LPN or an aide, but they are ghastly expensive and bring a skillset that we don't necessarily need. Our solution to our vacation challenge is that she'll stay with my son and his family, event though they both work and have a little one, and he's watched at home. But what we really want is some sort of adult overnight camp like the day care center where she can spend the week  - a vacation of sorts for her; while we are out.  

 


Hi there, Dr. Imani!  That 'respite care' thing is a real pickle. Every possible option costs money, unless she's in hospice care, in which Medicare pays for 5 days every 3 months for a stay in a nursing home. Why is Medicare so 'thoughtful' to cover such a thing AT THE END OF LIFE and at no other time???  Well, that's a rant for another time.

 

Home health aides are about $20 per hour. And if you hire a live in aide (if she sleeps well at night) that adds up, for just one night. I guess you'd have to find some place to visit that costs nothing, and the 'travel' costs are the care costs!

 

Thank you for writing. Let me think on this puzzle. Anyone else has ideas?

 

Jane 

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